On the Horns of a Dilemma

[Sparklingsunshine]

Hi

I'll just warn you now this is likely to be long winded lol but I want to get my points across and give you all as much info as possible.

In December I did a private blood test and my results were TSH 0.03 (027 to 4.2) , FT4 17.1 (12-22) and FT3 4.7 (3.1 -6.8). I felt ok on that dose but felt I had some room for improvement especially for FT3 so in February I increased to 150mcg Levo. I get this prescribed anyway as this is dose the surgery thinks I'm taking but I was only taking 125mcg.

I felt ok until a few weeks ago when I started to think I might be overmedicated. I noticed my pulse increasing, felt a bit hot at night, had trouble sleeping. My blood pressure had gone up quite a bit which concerned me and last week I woke up really sweaty in the night. I ordered another blood test kit from Monitor My Health and was set to do the test this week.

Last Monday I had a bad migraine, my migraines have increased quite a lot since I went on Levo, don't know if the the tablet causing them or the hypothyroid. On Tuesday I was walking home and started to feel peculiar, like I was swaying about. This feeling has now persisted all week. I nearly phoned 111 several times over the Easter weekend as I felt so off. There's no nausea or spinning around like vertigo, no hearing loss like Labyrnthitis, but I feel like my balance is severely off, like I'm on a boat or something.

As soon as I did my blood test on Tuesday I stopped taking Levo, took last dose Monday morning leaving 24 hours as advised. I wondered if it was contributing to this very unpleasant sensation, as if overmedication could be causing it. And I haven't gone on it yet.

Unfortunately I had a very poor blood draw, only managing to get a small amount into the test tube, I wasn't optimistic about it and MMH have indeed contacted me and said there was insufficient blood and they are sending me out another kit free of charge.

I had my nerve conduction tests today and asked the very nice neurologist about this swaying/rocking sensation and he said it could be due to the migraine affecting my vestibular nerve and affecting my sensation of balance. Weirdly my balance isn't affected I can stand on one leg, close my eyes etc, its my perception of my balance that is off. He said he's heard of migraine sufferers getting this and in some cases it can persist for a few weeks, which isn't good news. I don't even know what I can do about it. Not sure if there are medications that can help.

Anyway I'm now not sure what to do about my Levo as I have no bloods to guide me. I've now got no way of knowing if I was overmedicated. I felt like I was but seeing it in black and white would have been helpful.

Do I reduce my dose and go back on Levo as I don't think its affecting my balance as I thought. And if so which dose to choose. If 150mcg was too high go I go back on 125mcg or reduce further? To say 100mcg?

And if I go back on Levo and MMH send me this new blood test when shall I do it. I'm pretty annoyed I couldn't get enough blood out but this thing I have seems to be affecting my ability to function and think clearly.

Thanks for your help and congratulations for getting to the end.

[DippyDame]

So you are currently taking no levo? Is this the case?

You were prescribed 150mcg levo

But you took 125mcg levo instead.

Why?

Too many changes is not good

If you are hypothyroid you need regular medication, you cannot take replacement thyroid hormone in starts and stops.

Without current labs and because of dose changes it's difficult to say what happened.

However it is possible that you are under rather than over medicated

In Dec your FT3 was 4.7 (3.1 -6.8).

The result is in range so you are unlikely to be overmedicated

Your body is probably a bit confused with all the changes so you need to let things settle down on a stable dose

You could return to your 125mcg dose and see if things settle down

But...

I suggest you talk to your GP rather than muddle along with failed tests and erratic doses.

It's horrid when you feel, unwell and the temptation to make quick changes is understandable. It does not work!!

Take care.

[Sparklingsunshine in reply to DippyDame]

Hi

In October my TSH was high so the GP increased my Levo from 100mcg to 150mcg but I felt this was too much so I just increased it to 125mcg. I then stayed on that from October through to February. In February I felt I could try an increase and increased to 150mcg and after that's when I started to experience symptoms of overmedication, including this weird dizzy feeling. Haven't taken an Levo since Monday of this week.

[DippyDame in reply to Sparklingsunshine]

OK, I understand!

Dosing by TSH alone is just plain wrong but patients are often stuck with the problems this can cause thisThe TSH test was devised as a diagnostic test for hypothyroidism.

thyroidpatients.ca/2019/09/...

For accurate evaluation we need at least TSH , FT4 and FT3....essentially FT3.

Your TSH may have been higher if bloods were taken later in the day so not an accurate guide.

You know your body better than anyone else...and how you feel.

100mcg to 150mcg was a big increase which may have caused your new symptoms.

GP aside...,

I'd be inclined to start again with 100mcg, you may feel worse initially,

But, stick it out for 6/8 weeks when dose should have stabilised... then test.

Those labs will show the way forward.

Post new labs when you get them...

It may be a bit of a rocky journey but there is absolutely no quick fix with thyroid medication

Living without thyroid medication is not a good idea!

Good luck.

[Sparklingsunshine in reply to DippyDame]

I don't really want to involve GP, I don't like my new one and she'll just look at my very low TSH and immediately reduce my dose. I'm trying to avoid them tbh, hence why I wanted to test privately.

[jade_s]

Hi, I quickly read through a few of your previous posts, and this sounds like low B12 to me. I see you're on NHS jabs, have you considered SI (self-injecting)? From your post "I'm Neurotic, apparently. " - those are also all low B12 symptoms - the pins n needles, itching, etc.

I say this because I had something quite similar - upping my thyroid doses brought on worsening B12D symptoms. Here is a really old post of mine on this: healthunlocked.com/thyroidu...

At that time I could barely tolerate 12.5 mcg T4, after years of daily shots (SI) I'm now up to a normal dose. I still sway if I skip jabs or if I've overdone it. It's actually one the first signs I'm going low B12! It was also the first symptom to disappear after I started jabs. Funny enough before the crazy burning I refer to in that post developed, I looked back and realized I'd had the swaying issue for quite some time prior. e.g. in the shower washing my hair, or going up the stairs, I'd start falling backwards. With open eyes, it very much feels like being on a boat. I also suffer from migraines and for me it was not that at all. Just low B12. In my case, I did have to lower my thyroid dose, just because anything higher was intolerable (the intense burning etc), and as I've improved over the years throughly daily SI I've been able to increase my thyroid dose to a normal level.

[tattybogle]

I suggest you restart taking 125mcg as of now. If you did need an increase then it would probably have been wiser to just increase to 137.5mcg to try that out for couple of months rather than go straight to 150mcg .

the timescale from increasing to 150mcg to when you started to feel hot does fit with 150mcg being just a bit too much.

Because of the week or so off any levo at all ( bad idea ) and the previous period of 150mcg , you will now have to wait 6 weeks on any dose before a blood test will tell you anything useful , so i reckon 125mcg is the best bet for now .

going from 150 to 0 for week or two will make you feel very odd.. So getting some stability back is the most important thing to do at the moment .

Note ...Your previous results on 125mcg didn't really suggest 125 mcg was too much, so after you've got stable again on 125mcg if you do decide you want to to try a little less, i wouldn't go down to 100mcg ... that's probably too big a drop even if 125mcg was a bit too much . I think it's usually best to adjust by only 12.5mcg at a time.

[Batty1]

I get what I call a floating sensation without room spinning and when this happens to me it’s usually allergy attack and I use Flonase and it starts to clear up.

[serenfach]

Just in case it is nothing to do with your thyroid - have a look at Benign Paroxysmal Positional Vertigo (or BPPV) which is a common cause of vertigo, a false sensation of spinning. You will find an exercise to do to help, and it worked for me. It is a very simple exercise and will do no harm if it is not BPPV.